I am SO TOTALLY Honored! WEGO Health Awards Nominee & I am invited to be a Judge also!!!

UPDATE!!!!!!!! for Nominee and Endorsements ON THE WEGO HEALTH ACTIVIST AWARDS! DECEMBER 31ST 2013 THE DEADLINE!



Here is my "Profile" on WEGO Health Activist Awards for "Best in Show - My Blog!" Today, December 31st, is the LAST day for nominations and you can also if you like "endorse" me on my profile! This is just a huge honor for me, and I hope to make this one more step to helping ALL of you, out there, the others suffering from these horrendous illneses!




Talk about an incredible way to begin the New Year!!!! I've been nominated to receive a WEGO Health Activist Award & last week I was also INVITED to be a Judge in the panel!! I could not say about the judging part, since I was not sure I could. But, today I did get the great news!!! I will post more about this later this evening or tomorrow morning bright and early!!! Do remember if you wish to nominate someone December 31st the nominations close!!

By the way, I got nominated for my "Blog!!!!"

I am so very grateful to ALL of you for the support and well wishes you give to me!!! As I said on FB, these past few months have been a bit rocky in many ways. So, these are just so amazing to me....

Rhia







Only a Couple Days Left to Nominate for WEGO Activist Awards!!!!!

Please be sure you "run" over to WEGO Health and Nominate your favorite Activists!!! From the "best blog", to best health "activist" geek, there is an "award" for many that you may feel that deserve the "accolades" for their vast efforts in the realms of Health and how they give themselves willingly helping to show more people about different illnesses, make others more aware of illnesses, provide enough "pull and push" to get more research, more medications, more doctors, and more activists on board the "WEGO Health Train" and help to try and give more attention to so many health issues that definitely need to be looked into so much further!!!! 

Take a look at the link below and see which of your favorite health volunteers/activists may fit one or more of these Awards! The 31st of December is the Deadline so don't delay!!!!!




Below are only THREE of the 14 Health Activist Awards being given out by WEGO Health for the year's annual awards event!


https://awards.wegohealth.com

                                                          https://awards.wegohealth.com

Blogging My "Real" Life as an Autoimmune Arthritis "Victim"

Some May find my "Blog" a bit Different, so I want to give more of "me" to you... 



I realize that my blog may be a bit "rough around the edges" at times. I would much rather tell it like it is daily in my life. I prefer not to "sugar coat" daily living with autoimmune arthritis, chronic pain, and health issues that almost control my every waking minute!

So, rather than try to sit here, and find ways to give people a look at what myself and my family go through in reality. Doing that to me, is giving you, as another victim of these horrid illnesses a chance to know it is "okay" to be angry, upset, have bad days, say what you feel, not sugar coat your own reality, not have to try and hide the fact that your life is also just a mess at times because these illnesses overtake every step you make.

When you have a flare, nothing is "nice". Everything "sucks". Life is truly Hell! So, I could write about my medications, or find anything else to sit here and say, but that would not be what I need to give those who are following me a "false sense" of the days when you feel like you've been run over my a train! Times when you are on your sofa, or in bed, wishing you could have a break from pain, fatigue, shingles, mouth ulcers, rashes, stomach issues, kidney problems, medications that cause side effects, and this list goes on and on.

When these Autoimmune Diseases decide to enter your life, nothing, and I mean NOTHING is the same!!! You have to "adjust" your life in all ways. There are things you can't do sometimes. Like go out with the girls shopping, or meet the guys after work for a beer. Family get togethers, may find you smack middle in a horrible flare, or worn down from a new infusion, thus you feel guilty yet you feel like you will just have to sit this one out, (probably more like lay this one out). Your "normal" routine of life is completely turned upside down. Often you wake up with pain, and stiffness, that makes you have to take additional time to get up and get going. You find yourself slower at everything. It once took me about half an hour to get dressed to go somewhere. Now I better start at the very LEAST 2 hours ahead of time. Sometimes more than that, depending how I feel that day. You may not have the strength to do laundry, vacuum, dust, clean the bathroom, and make a fabulous dinner. More than likely if you get a couple of things done, and a meal on the table, that is a "good day". Shopping becomes a living nightmare. If you have a huge market or are going to a large store such as "Wally World" by the time you get in from the parking lot, you feel as if you walked a mile. Then if you are truly shopping with an entire list of things, that means "hours" of going through that humongous store!!! Then if no one is with you, that means taking that entire basket full to your vehicle, loading your purchase into your vehicle, and then trying to put a basket somewhere hoping one of their places for baskets is close!!! Plus, I bet many of you have this happen... I have a "disabled parking" plackard. My orthopedic surgeon wanted me to have one when I went through all of those knee replacements, then just all of the other illnesses, shoulder replacement, neck surgery... so I have one.
If you are not absolutely limping, have a crutch, or in some way look "disabled" boy are there the "looks" that you get from others!!! Thus the business about you do not look "disabled" or sick! Now I am one that uses mine sometimes, and at other times I park in a regular spot. If I am alone, and I am there to buy a large bill of groceries, or I am in a flare, not well, weather truly bad, I use mine. But if my husband's with me, or I am feeling okay etc... and especially if there is only one left, then I just ry to park in a normal spot so someone else can use it.

There are so many ways our lives are different. Some of those differences are just almost too difficult to deal with. Vacations you may miss, your hobbies that you used to love. I have a dear friend who loves sports. She used to play baseball, softball, and loved so many sports, yet RA has damaged her wrist and hand, thus that ended her ever playing ball, or other sports she so loves again. I hear story after story. For me, things such as running, snow skiing, mowing my lawn and doing yard work is out of the question. Bless my neighbors heart, he sees I've bought plants, or need to weed the flower beds, or mow, and he insists on doing all of it, and never wants to take a dime for helping. But I know he and his wife and two kids have a difficult time making ends meet, so I always give him money and tell him it is "for the kids"... LOL Then he will take it. :)

Sometimes we see family and friends all but disappear from our lives. It could be for several reasons. One might be there are those that just don't do well around someone who is "chronically" ill. Not in a bad way, but they can't take watching you in pain and suffering. So, they tend to not be around as much as they may have been. Others are just "busy". Since you have "slowed" down, and they are still in that "run, run run" mode, they don't want to be slowed down due to your illness. It sounds horrible but I know it's true. Others just fear the entire ordeal. Either they "fear" it is contagious (sounds ridiculous, but I had someone ask me if it was), or they fear it will cause them to be in a "mental anguish" if they see you in a state of illness. Some are in disbelief that you are that sick. Some family and friends are in "denial". They feel you are making all of it up. They feel it is just like, okay so your knees hurt, or your wrists hurt, well others have "arthritis" & they are up and doing fine. Some think you are a hypochondriac. And that if you would just stop all of those "harmful medications" and take vitamins, eat "right, exercise,  you would "feel better". Or there are those that every thing they see online or on the Television they think it is what you need! My Mom is bad about that? She doesn't sleep, so she watches those stupid "info-mericals" all night. Then when I go over to her house, she has all of these names of rubs, pills, etc. that should "help me". So, I have to come home, get online, prove to her the stuff is pure "quackery" and let her know none of it will help me, nor anyone else! Bless her heart, she is still in that "zone" due to her age, that every thing she sees, hears, reads, she totally thinks it is the truth! She gets phone calls from sales telemarketers constantly. She used to listen to them6, and believe every word they said. I had to put a "no solicitors" sign on her front door. Again she was constantly bombarded with people trying to "pave her driveway", or "insurance her water pipes", or "save her money on her Electric bill".

Speaking of my Mom. I am here to help her. I am an only child, thus I feel it is my responsibility since my Dad passed away in 2005 from complications of a knee replacement. She was and still is in many ways completely clueless about the world. Even small things like using a "debit" card, or putting gas in her car, calling in a prescription refill & putting it in the "automated system". She would not even learn how to use a DVD player we bought her. Dad did it all. Bill paying, handling money and investments, from putting gas in the car, to mowing the lawn, or taking care of just about any and everything. Which was great, BUT he NEVER taught Mom how to do any of it!!! So, when he passed away, it was total chaos here. We did move here, from Seattle, so we both would be close enough to help her. Of course I was already in need of several surgeries, so my first couple of years here were spent in the operating room and recovering. I helped her until I finally got my total disability rewarded, then it I could finally get to the doctors I needed to get to. At the time though I had not gotten the "autoimmune arthritis" diagnosis. It became apparent as the orthopedic surgeon was in my knees, shoulders, and so forth that this was not some regular "osteoarthritis", there was much more there in damage than it could have done so quickly and so early in my life. It was not long after a couple of surgeries on my shoulder and both knees, that my PCP put it all together and diagnosed the "autoimmune arthritic" illnesses. I began to have all types of symptoms.

Back to Mom now that I've given you a bit of "history" about her. So, I also have to do many things for her. It is not usually a huge issue, but there are days, or even weeks that I am busy enough, or have a flare, that trying to take care of "me", and then trying to take care of the house, and then all of her things going on, becomes almost overwhelming. You would not believe the mess that I had to go through with her insurance and the surgery center to get her surgery bill paid correctly! I spent over 6 months trying to get the to "code" the surgery correctly so the insurance would pay. I was treated like trash, I was spoken to like I was an idiot, I was "lied" to, because for 3 months I was told the "supervisor" had to handle it, and she was "out" with surgery. It was all a bunch of bull. I even went out there face to face and they basically said I was wrong, and I needed to just leave. That was in front of all the people in the waiting area! Well, I knew that the orthopedic surgeon did have his own personal funds in the center. Several of our doctors got together and opened it, with another company's help. So. I went to the "big boys". I wrote a letter explaining ALL of it. I had names, dates, what they said, etc. and I told it all. I took it to my doctor's office. About 2 days later, not only did I get a call from my doctor, I got a call from the head gentleman over the entire center, with a HUGE apology!!!!! They were "grafling" at my feet, trying to make amends for the stupidity and ignorance of their "staff" the worked with filing insurance claims. Plus not only was Mom one of the patients that had the same insurance and they had tried to say they owed money that they didn't owe either. The point of me talking about this, IS because all of that took my time up, and lots of it. Even when I was home, ill and certainly not feeling like talking to those "morons", I did it, because it had to be done.

I realize that I certainly not the ONLY HUMAN on this Earth with some type of chronic illness/pain. I also have come to a real eye opener. That is we have a tremendous amount of our population all over the WORLD suffering from Autoimmune Arthritic Diseases!!! And in bringing those facts into the entire realm of this blog post, they also are subject to losing friends, relatives, not having a care taker, or they are a "care taker" for a family member or even possibly a close friend!

So, how do we "balance" the situations? We NEVER know when a flare or symptoms are going to pop up. We may feel great in the morning and have shingles, fatigue, pain, or any number of problems within hours. So, it is almost impossible to try and "estimate" how much or how little you will have the "physical" ability to do. The ONLY way I can do things, is try to make arrangements ahead of time. But, if somethings happens to me, or I am ill, I try to have an "alternative" plan ready. Fortunately, up until about 6 weeks ago, my husband can "step in" and take Mom to the doctor, or run an errand, or whatever she might need, he can handle it.

Of course as "Rhia's Law" might have it, my husband has been in terrible pain. Between going to a clinic and having a MRI, that shows the pain in his shoulder is coming from his neck. Well, I can certainly relate. Same Story with my last surgery. Almost my entire cervical spine was a mess. I had a 4 level discectomy, fusion and 2 replacement discs. So, I totally understand his situation. But, now my "caretaker" is out of pocket. I've had to basically "buck up" and pull not only My "Weight", but HIS and MOM'S also. Now he is in bed with some type of horrible flu, bronchitis or something. It happened suddenly night before last, and I pray I don't get it. I've disinfected everything in this house 10 times! And I am staying as far away as I can. I fear if I catch what he has, I'll be in the hospital with my immune system as it is. I've already been exposed to more than I care to think about having to be at clinics several times with my husband and Mom.

So, WE (WE - as in ALL of US with AUTOIMMUNE ARTHRITIC DISEASES) can and do have a great many "mountains" to climb. We also know about those deep valley's. They can take you in so quickly and put you right down at the foot of the mountain you just climbed up. Of course we also have "rewards" in the sense of the term when it comes to "us", "we" when the time comes for us to assist those like ourselves into a direction of wellness!!! When we use our voices, social media, writing, blogging, sharing, volunteering; ALL of those things are divine intervention that shall lead to better and quicker diagnosis, much more aggressive and earlier treatments, that then can HALT some or much of the damage these diseases do!!! It is "too late" for me. I have so much "damage" that even though we are trying to aggressively work on it, I already have most of my joints either replaced, and the others will probably have to be, hopefully not, but it is a good possibility I face that in my future.

BUT, until the moment I can no longer type (so I will find a program I can speak into and it will type for me), my heart, my soul, and my mind is set on the GOAL of HELPING others! Standing up with other like minded wonderful people that also share in my heart's goal!!! Through our struggle, and trepidations. we have found STRENGTH today and we stand United in our goals to change the face of Autoimmune Arthritis Diseases forever!

So, this is much of "my life"... day to day... and now the part here at the last is the very best. It is my new opportunity I've found with the IFAA, as an Active Volunteer. I've also been able to be able to give my own story to WEGO when I was invited to be on a panel. My blogging shall also continue to be not only here but on the IFAA's blog site. And with the upcoming WAAD14!!!! there shall be AMAZING THINGS FOR EVERYONE TO GET INTO THE Online CONVENTION in early 2014!!! There will be more upcoming information as we get closer to it! So, I'll post more when I know details... Take care of YOU!!!! Then you can help others....











Annual Family Christmas Letter for 2013....

                   How Can It Be Christmas 2013 Already?



I’ve been contemplating over writing this “annual Christmas Letter” for weeks. Although it is a tradition, and I am not one for altering traditions; life in itself gives you no choice BUT to alter, change, move, forward, backward, and sometimes even upside down, as far as the traditional sense goes.

I do just sit here in wonderment of just how quickly this year has flown by. It seems each February that rolls around (my birthday month), makes that year fly by swifter than the one before. As kids we fuss that it takes such a long time for holidays, a new school year, Summer to arrive, time for us to have our driver’s license, time to graduate… 
After you are out of school, in a job, possibly have a spouse, a family, and all of the hustle and bustle that goes with those things, time seems to “turn a page” in a greater way than the years before. Marriages seem to go by more quickly, kids grow up just all too fast, and then you are again by yourselves, with an occasional visit from the kids and the Grand kids. 

As I watch my own Grand kids grow, they are also growing from one stage in childhood so fast, and the next thing you know, they are like my Grand Daughter Heather. Here she is a teenager and getting her driver’s license as they turn 16 in the blink of an eye. My oldest Grand son James jut turned 8 on the 6th of December. As I looked at all of his  birthday pictures on Facebook earlier this morning, my memories were of him, just practically a newborn a few weeks after we moved back to Texas in 2005. I am amazed as I think about them visiting at that time, with their first newborn son together; yet now their is the 2nd one Logan, who is sure not a baby anymore either. It was so cute to see Logan right beside James every step he made in those pictures! He follows his “big brother” around everywhere he goes. Then again I see Heather, the oldest as a young woman, not the tiny 2 year old child she was when I first met her. Time has flown by, and it does just seem to fly more quickly with each turn of a page in life. 

We tend to take “time” for granted. So, rather than spend this moment of time fussing about how time flies by, I’ll spend these few moments to let you know a bit about the homes of our families.

Mom is doing well. In fact, she is doing much better than the rest of us in many ways. Her health is good. But, she did go through a bit of a scare with her heart earlier in the year. She had been a bit short of breath, but she called me one morning to say she could not even walk to the mail box without being very winded. So, I called, got her into the doctor, and they thought it was her heart. They wheeled her over to the ER at the hospital next door. Her EKG, blood work, and all indicated she did not have a heart attack, so that was a good thing. In fact her doctor kept her overnight, and monitored her heart, along with doing labs every few hours to make sure nothing was awry. He wanted her to see a cardiologist just for the sake of making sure all was okay. in fact I took her to my own cardiologist, who is just wonderful. Dr. Meg Sullivan put Mom with a couple of other tests, and one was an echocardiogram. There was a “severe” abnormality of her mitral valve, which would not have been caught on an EKG or blood work. It was “sloppy” and loose, thus blood with oxygen is not all getting where it needs to be, thus causing her to be out of breath. The first “echo” was showing this in the “severe” range. That usually means open heart surgery, the only way to repair that valve. I think they have some doctors doing it with a scope, but I am not sure just how well that is going yet. Anyway, I asked Dr. Meg if we could do something “else” before we consider going through a huge surgical procedure. Mom was of course stunned and certainly NOT ready to even think about open heart surgery and I was also quite stunned myself. I think our cardiologist saw that neither of us were exactly thrilled and in fact both of us, Mom and I were in shock. That was the last thing we expected to hear. So, the doctor did suggest that Mom could “increase” one of her medications, Lasix, so it would take MORE fluid from her body. With that, even less sodium intake, adding more Potassium to her schedule, and “decreasing” the amount of fluids she drank daily. Believe it or not, it worked! The Lord was certainly on her side and all of ours. Two weeks after she began this routine, they did another ultrasound on her heart. Not only did the issue go from “severe”, but decreased that “sloppiness” so much, that her mitral valve was almost “normal”, rather than appearing diseased! Talk about miracles! That was a miracle. So far, that was at the first of the year, she has not had any real issues again. I am sure it may come to give problems some day, but for now, she had a 6 month check up about a month ago, and all appears to be well. I was extremely thankful. Mom has been so very fortunate health wise, that I am not sure she would stand to go through something that dramatic as far as a surgical procedure. She is having some horrible pain issues with her right shoulder. It has gotten so bad she is unable to even comb her hair. I’ve been fussing for her to see our Orthopedic surgeon. I feel it could be her neck, since I went through much of the same with mine. After having a shoulder replacement on the right, then also having cervical neck surgery due to continued pain in my right shoulder blade, I fear her issues could be cervical neck related also. Other than this issue with her shoulder, and of course she is having more problems with arthritis, and a bit “feeble” like having to watch going up and down stairs, holding onto rails more, and that kind of thing, she is doing very well to be 78 years old. She sends her love to all.

Both Jason and Amanda; along with Amanda’s husband and three children are all doing okay. Jason recently took a job not far from where Amanda and her family live; about 30 minutes out of Corpus Christi. So, he spends quite a bit of time with her and her family. I  am happy that they have one another close now. They have been close to each other, ever since they grew out of that “kid sister - older brother” stage years ago. It is wonderful to see them enjoy one another and have a good relationship. She stays on the go as usual. Never a dull moment with the three kids and their friends and families. She just doesn’t know “yet” how to sit still very long! Reminds me of “me” when I was her age. 

Jason decided to change a few things in his life. He is out of the career for now of any type of law enforcement, and is now working for a company out of Corpus Christi in the oil business. He seems to like it, and it seems to be less stressful, of course than the law enforcement jobs. Jason has some issues health wise with what seems to be symptoms of Fibromyalgia. He has had “aches and pains” with his joints for several years now. As of this past year it seems that some other symptoms have cropped up. These newer symptoms seem to exemplify more in the range of “FM” (Fibromyalgia)/“CFS/ME” (Chronic Fatigue Syndrome). He has been taking some medication that seems to be helping and our hopes are that he shall continue to see improvement, and be able to continue on with all of his dreams and plans for the future. 

Well, “our home”. Actually things have been not nearly as “upside down” on the health front as the past few years had been. In saying that, I have had “new symptoms” and side effects from the Autoimmune Arthritic Illnesses. They have not been the most pleasant to say the least. I suddenly developed “double vision” the first part of this year. We first thought it was because I was not getting much sleep. So, I was overly tired most of the time, thus it was effecting my eye sight. I went through several doctors/specialists, lots of tests, including a “temporal artery biopsy”, and in the end, one of the best specialists in the field told me, “Frankly, he thinks it’s the Lupus, but is not sure exactly why it is”. He put a totally different type of glasses on me, with spheres in both lenses. They do a great job correcting the double vision, while I am wearing them. With them off, I still see “double”. Although we are still a bit baffled by it all, we also know when it comes to these autoimmune illnesses that have kind of “taken” over; there sometimes it just “not” a “diagnosis” or “explanation” but to say it is one of those. 
I have made change in the RA medication. I am taking “infusions” every 4 to 6 months. The hope is that this medication will somewhat control the RA pain AND our greatest hope is that it will slow down the progression of the damage to my joints. I have my thumbs that are just in terrible shape. The use of my hands continues to get worse each year. Until I have just about lost all use, or the doctors insist on “fusing” the thumb joints or replacing them, I just do things to help assist me in opening things, buttoning, holding and so on. My only other “oddity” is that I recently developed an “oval lump” on my lower left abdomen. I was at three doctors, had a sonogram, and no one could figure it out! (what’s new)… Finally, one of my regular physicians’, PA (assistant) saw me again, and “bingo” she found the problem right away. Of all things I have a “hernia”, actually I now have 2 hernia’s, one on each side; left and right. Only me! From all I have read and been told, hernia’s (inguinal hernia’s) are EXTREMELY difficult to find in females. Plus, they are usually “genetic” in nature. When we are in the womb, well before even “sex” is determined there are two tubes that form, and after that then the “sex” of the baby happens. But, those “tubes” especially in females can be “weak”. That weakness tends to run in families. So, as my PA told me, my own daughter could be subject to having a hernia or hernia’s also. It is only genetic as far as they know, more on the female side. Even though male babies, often have a hernia(s) when they are born, or very small. But those in themselves, supposedly are not “genetic”. I thought it was “wild” but I did some research and that is exactly what I found. I guess we learn something new no matter how old we are. Life to me stays absolutely fascinating for that reason! No matter how lousy I feel, or what is going on, I still love learning something new all the time! Especially when it comes to the “medical realms” of life. 

Jim, is also having one heck of a time with a shoulder/neck problem. He recently had an MRI, and in fact we have not gotten the results as of the time I am writing this letter. Our hopes are, and fingers crossed, that he is not facing surgery. But, it just does not look good. He stays in a tremendous amount of pain, and of all things, the pain is almost unbearable each time he sits down at the computer to work. Well, being the he designs and develops web sites as a career makes it a bad situation all the way around. I pray that rather than be some that needs surgery, that it may be something that is a “chronic inflammatory” process, which possibly corticosteroids in a larger dose, for an extended length of time, and some powerful NSAID”s maybe the answer. Surgery is just not something he wants to face at all. Plus he is without health insurance at the time. As anyone knows that works for themselves, with things in a mess as they are in our country with the health insurance situation, we are not sure how we will face something surgical in nature. But, I know that our “Higher Power” is watching over us, and “He” will make everything happen as it should be. 

I swore I wouldn’t make this long, but here it is, long as usual. I’ll just say a couple more things. I did have my 2nd PUBLISHED book go out earlier this year. I now have TWO books published, and they are on amazon.com   …   I use the “pen” name of “Rhia” or “Rhiannon” Steele. Both are Poetry/short Prose books, and are named “Ramblings of A Seasoned Soul” and the other is “Time Tattered Musings”. If you want to and have a moment look them up and you can “Look Inside the book” on Amazon, on both and read a couple of pages in them. My hope was to have a “3rd” book out by now. My “dream” to  be a “published” author has came true twice! Yet, my ultimate dream is to have the journey of my life in a book published. I have the entire “story” in bits and pieces all over my computer as well as in my blog online, and dozens of “handwritten” journals I’ve kept since I was around 14 years old. Every time I try to “begin” the book though, I just never quite come up with how I want that very first paragraph, page; the first chapter to sound. All of us have “a book” in us, is what I had a dear friend say to me. In a way that is so true. We “all” have a story about our lives, and how we got from point “a” as a youngster to point “b” in our present, plus we have ideas about point “c” where we hope to be in the future. But, some just never write it. I want to take that step and tell my story. Much of it, I’ve never shared with anyone. Much of it, I have shared but with only those I felt could totally understood where I came from. Yet, everyone that knows me well, especially Mom and Jim, have continued to encourage me to write “the” book, book… as I call it. 

I hope to accomplish that “dream” and write the “ultimate”, “Book, Book”, this year. That is if the “Lord willing and the creek don’t rise”, as the saying goes. As far as the “rest” of our family, “Tazzy” and “Bubba Gump”, our two “fur kids” are just as spoiled rotten as ever. They are getting older also as we can tell. Tazz, our Pug, is the oldest. She came with us from Seattle. That was in 2005. She was about a year old then. Bubba, is a
“Chi-Weenie”, and he is a character. They both keep us laughing, and talk about “separation anxiety”. They “cry” if I or Jim leave to go to the store! Bless their hearts, they are so accustomed to the both of us being with them. But, they are a joy, even though they can aggravate the heck out of us as times also. Just like 2 kids for sure!


My “projects” are many. It seems I always have my “fingers” in a different pie. I recently became an “Active Volunteer” for a non-profit Foundation that is trying to help bring awareness to Autoimmune Arthritic Illnesses. I just “graduated” from a several month class learning about the Foundation, and all they are accomplishing. It is truly an amazing story. The “founder” began about 4 years ago, after she was diagnosed with Rheumatoid Arthritis. She wanted to make a difference and she has truly already done “miracles” through what started out as a “Buckle Me Up Movement” and a bracelet she made with a “belt buckle” at her apartment in San Francisco. From there it has grown to her and 4 “co-founders”, became an official non-profit foundation, and is about 35 volunteers strong and growing quickly. She has honestly accomplished things in 4 short years that many would never accomplish in a life time. And ALL of us have one or more Autoimmune Arthritic Illnesses. The Foundation is International Foundation for Autoimmune Arthritis. I would love it if you have a moment to take a look at their website. Even it does not really tell just how incredible this truly is and how many lives she and all of us as a team shall touch! You can visit the website at: 
http://www.ifautoimmunearthritis.org  …
Also, I will be doing some blogging on their own blog, which is called “Systemically Connected”. Plus my own personal blog, “Gaze Thru Pain - Lupus/RA & This Foggy Brain” is the name of it, and the URL to my blog is :  
http://rhiannonsrisetodreamstate.blogspot.com 
I have to laugh, of course, as I say every year; I’m not going to make my “Annual Christmas Letter” so long! Of course it is always long, and probably longer than usual. I find as I write, there is lots more that went on during the year, than I think did. 

My hope… Our Hope is the you and your families are healthy, happy, and enjoying one another throughout the holidays. May you find peace, joy, and most of all love throughout 2014 and beyond. Know that we think of you often; even though we aren’t close physically, in our hearts and spirit we are always right there.


Much Love, Merry Christmas and A 2014 that shall be Wonderful!  Rhia,Jim, Tazz, Bubba… and All of Our Family!!!! 

Holiday "Lost" Spirit & The Apparent Lack Of Giving of Self To Find Your Light

Taking The "Money" Out of the Holidays to find the true Reasons for This Wondrous Season




I usually have posted my "annual Christmas letter" by now. I decided this year to wait. I was not sure I even wanted to post it here and on my blog. I have first hand watched so many people that are dear to me, both "right here" and those that are my "FB Family", go through so much pain, suffering, fear, shock, and dreadful things especially within their health, that I find it very difficult to try and make this holiday season "Happy" and feel "Blessed". How do you feel "blessed" when it is like the entire universe has fallen in on you, and that black hole that the universe came from, has now swallowed you up in it, and pulled everything in on top of you??? I know, I know... Faith!!! I've lived in the footsteps of "faith", "hope", & trying to just "be". I have tried my best to "take all the bad" and try to see that positive side that is supposed to come from the resonating facts that it seems nothing lately is very good. In fact if anything, there is just too much "bad". I managed to write my Christmas Letter this year and I did put it in the Xmas cards I sent out. But, even as positive as I tried to be, I feel the ones who read it, will think I want them to "feel sorry" for us, or think I am griping and moaning. Or they will think "Wow" what a mess? I am holding on by my "fingertips" to the rope of faith that always in the past, has "sustained" me, no matter how bad things got. In my past life, things at one time or the other probably have been "worse" in many ways. But, as far as health wise, for myself, my family, and so many of you, it cannot get much worse! I hear it, I see it, I read it daily, everywhere you turn, people are hurting. I know in other ways we hurt also, but I am speaking more about the "physical" pain so many of us are dealing with. From all of the drama around autoimmune diseases, which seem to be running rampant in our world, to those I know that are so dear to me battling cancer, several with diabetes that have now had to begin having dialysis due to kidney failure. These are people in the prime of life! Many my age, and like myself, they are seriously ill in one way or the other. Yesterday, I open our tiny daily paper, and TWO guys 19 YEARS old, were in the "Obituary" column! I was just flabbergasted to say the least! I could not believe my eyes. And what makes it worse, it has been that way now for months. It seems like each day, I open our "Daily Paper" there are people who are in there early 50's and some much younger that are passing away! I realize Ellis County is not tiny, but it certainly is not some huge county with many large cities in it! We have no "cities", but more like towns. Even our county seat, Waxahachie, is not a huge city by any means. So, how can so many people, at such a young age, in a smaller community like this, be so very ill?? It seems like insanity! I had a talk with Jim after seeing the "evening news" yesterday, that all we hear on the news or read, is "bad". Nothing "good" is ever broadcasted. As we talked about it, he said it is because "good news" does NOT sell! In other words, our news is full of the "bad" because that is what brings readers and watchers in! How sad is that? As I began to repute his statement, I began to wonder if what he said is really true? Have we become a society so complacent, so weary, so looking for the dramatic and the shocking, that "good news" does not sell? I have to think he is probably quite right. Look around. Even with the "spirit" of what this season is all about... greed, money, more about "how much" you buy and give for gifts, how "pretty" your tree or decor is, how many gifts under the tree, how many parties you attend, with the latest dress and accessories on... along with how many toys the kids get, how much you spend on your kids, getting them the "latest and best" and most wanted toys on the market, not sparing what you spend at all. I've watched my "debit" card purchases lately be so slow in going through the system. I thought about it, and it is because SO MANY people are going DEEP into Debt, for the New Year that is not even here yet! Those credit card limits are moving to the max fast for many, because rather than being about the "pure" meaning of this holiday, the monetary portion has become number one! The part about the birth of Christ, and what His journey on this earth meant, until the day His "mortal" life was taken, so He could stand in the place of us for all of our many transgressions. I know that the "season of giving", pretty lights, and festive decor are a part of the celebration of His birth. But, we have become totally wrapped up in buying, spending, and thinking about the material things, that the spiritual has been thrown out the window, bath water, bucket, baby and all... as the old saying goes... Rather than getting "better", it seems to just get worse every year. I've witnessed it here my hometown for weeks!!! No matter WHEN I go to the market, or any store in town, no matter the time, the day, everyone is packed like sardines in the stores!!! I have to wonder how people are shopping constantly??? In the middle of the week during the early morning, and early afternoons, the stores are full! I told Jim it appears that people just stay in town, and it is vicious circle... they just drive and shop from one store to the other and must never go home! It sounds like a joke, but heck how can people afford to be in stores constantly??? I try MY BEST to STAY away from shopping!!! The longer I can remain at home, out of all the stores, the less money I am throwing out the window. I've found that "stuff" that I used to think was so necessary, I have come to not need nor miss at all. So, when I began to "make do" with what I have at home, I dramatically lowered our "cost of living" each month. Yet, even with all of the coupons, sales, free stuff, stock piling, and shopping as wisely as possible with always a list that I try my best to never swerve off of, we are basically in the hole monetarily like everyone else. Between the two of us, just the medical bills have been ridiculous the past month or two. Jim has no insurance, so when you are a "cash pay" patient, it does not take long for the "cash" to run out! And we have just about "cash paid" ourselves to be considered in the poor house. I am rambling on. I so wanted this to be about the "sunny" and positive light of the season. But, when every day you run into those that have the same horror stories in their own lives, it makes it difficult to find the "light" in that black hole of darkness. I still "stand" on my rock of faith. But, at times it feels like the waters of life have "broken" down that foundation some. I lately, have not felt as strong and sturdy on my faith's foundation as I usually do. Maybe all of us feel this way, but just don't want to admit it... So, call me a scrooge... or think I am crazy, maybe feel like I am giving myself a "pity party", but no this is not about "me" but about the "droves" of us all around, everywhere I look... I DO WISH YOU a Better Day, and beautiful warmth of family, friends, food, peace, understanding, good health & most of all love during this holiday season. I also pray with all my heart, we each find "our" foundation sturdy once again... As I try to cast my burdens off my shoulders, and give them over to my Higher Power, I pray we are all healed, mind, body, heart and soul.... Merry Christmas!!! Rhia





"Resolving Resolutions" for 2014 & Weird Weather, High Humidity in December, & RA/Lupus PAIN!!!

It's Time for A Chance To Touch Others Lives, even through Autoimmune Illnesses, You CAN make A Difference!



As I am deciding as I do each year at this time what I shall decide to try and "change", do more of, less of, try new, stop the old... in other words... what some call my "Resolutions" for 2014, I actually don't like the term "resolutions". Simply said, more often than not, it is a "cliche'" and those things usually don't get accomplished. I'm not saying "we" just make them for lip service, but it has become this tradition to make your New Years Resolutions. Whether it be to eat healthier, quit smoking or other bad habits, visit family more, exercise more, get stress under control, and the list of those things we want to try and do or not do, to make our "New Year" a fresh beginning. As we press forward quickly into the 2014 year, and I do mean QUICKLY; as most of us, I also am reflecting upon 2013. I managed to get my 2nd prose and poetry book published! That was a great achievement! Yet, I am somewhat disappointed as myself because I did not get as far on my "life's battle with AA illnesses" as I wanted to. Last year 2012, I had made a promise to myself to have it ready for the last look overs and edits; then have it ready to publish in February 2014. At that time, the task seemed very possible. I was thrilled to have made myself a goal in date form. So, I put my eyes on the road of writing, yet got wrecked and knocked off that driven path several times over the course of 2013.

As I had begin to say in another blog post, that I still have not "published", I had been writing about our little neighborhood and town in general. Usually right at the first of December, every house on my street has some Christmas lights and decorations, including us. It is like we almost have an unspoken tradition on the block that we all put something up for the holiday, even if it is just lights. We have icicle lights that look amazing on the front of our tiny home. I had decorated my two beautiful planters last year with wrapped "presents", Xmas Flowers in silk, and had lights around those also. I had little sacks that I put the tiny battery operated tea lights in, in every window in the front, and always turned them on all night about the last two weeks before Christmas. A door decoration, our tree with our at that time 10 "sleigh bells" we order each year as a tradition from our very 1st Christmas together, little decorations that I hang up above each doorway in the house, cup towels decorated for the holidays, and my Christmas Bedspread set that is just beautiful with these "golden colored" sheets I use with it. At one time Jim and I even made a new Christmas puzzle together to hang up. It seems we either got bored with those (I have like 40 we put together, put on a backer board, and I have them hung up in the house. I have three "logs" that I had gotten from a huge limb that fell several years ago from one of our trees. I took the saw and cut off a fairly thick section about 14 to 16 inches long or so. Then I take Xmas flowers, ribbon, tiny decorations, cotton for snow etc, and decorate all three of them. One for each room we are in the most. Kitchen, Office and Living Room.

But, as of this morning, one neighbor has his lights up. Not one other home is lit up, including ours. As I began to reflect over the past couple of months in our own little world, there are MANY, MANY of us who just almost "missed" the fact that holidays are here! From the horrible things happening in our nation; destructive storms and weather, to wildfires, droughts, floods, crops destroyed by bugs. People are still hurting from job loss, homes being foreclosed on, trying to just feed a family, money is tight for a huge amount of our nation and around the world. I had a conversation with a close friend of mine. She had told me her husband, who has been with a company for 11 years, had his Christmas bonus cut down to ONLY 10% of what it always was!!!! This company is NOT hurting by any means. It had the financial ability to treat its employees right. Yet, one bad apple in the bunch, with greed as green as a gourd in a "management" position, took away from those who have worked for it, so he made himself look good. Thus his "bonus" is quite "stuffed", and the others that have been loyal employees for years, are facing Christmas, with children, and no idea until the last moment, they are not going to have the bonus they are expecting. GREED! It is all over this world!

As I look around at my sparsely decorated home, and see that we are certainly not alone, it instills in me, that we must open our eyes, and open our hearts to make a difference in this nation in the coming years.

Whether we are advocating for a medical and health causes, government cause, specific health problems, domestic violence, and all of the other 100's of Charitable causes we contribute to, we are giving of ourselves to make a difference in the quality of life for others. To me, giving of yourself, through being a volunteer for an organization you truly believe in, is one of the kindest, compassionate, and self less things you can do.

With "one" person's voice, we can "change" the world! One leads to two, two lead to 10, and from there it grows, shapes, expands and becoming a beautiful thing.

We can all give a bit of cash here they and yonder, but to give of your time, of your heart, and do it freely without an provocation but because you want to make a difference in the lives of those who suffer and who will suffer without OUR voices uniting together!

So, as we reflect on what is truly precious in our holidays activities, or as you think about some of those "New Years Resolutions" give thought to giving of "your time" as a volunteer online to something, someone, any cause that touches your heart and soul! Within those moments that you give of yourself freely, you shall find a peace that does pass beyond all you could ever understand....

Hopeful for a better year in 2014.... Rhia


Introducing WAAD14!!!! Join Us for an International Online Convention of 2014!!!

World Arthritis Day 2014!!!!








Are you ready for WAAD14? Are you ready for the largest virtual gathering of nonprofits and autoimmune arthritis resources available under one roof?

Get ready... while WAAD14 is hosted for 47 consecutive hours ONLINE at a separate website/Virtual Convention site starting May 19th at 6am ET/USA, the Countdown to WAAD14 starts in March!

This years' theme, "A Day in the Life of an Autoimmune Arthritis Patient" will kick off in March with dozens of nonprofits from around the world joining forces to play "Amazing Race" type educational awareness games, all created and managed by your WAAD14 creators and Hosts, the International Foundation for Autoimmune Arthritis.

Get excited for WAAD14!

If you are a nonprofit and want to sign up please email Tami@IFAutoimmuneArthritis.org.



My Very Own Way I Can Show "My" Little piece of the World I "Represent" International Foundation for Autoimmune Arthritis

             Representing International Foundation of AutoImmune Arthritis



I did not get to put these photos up yesterday with the doctors visits and so forth. Holidays, RA, Lupus, pain, stiffness, medications, stress, all rolled up into one huge ball when you are right in the middle of any type of Chronic Pain, Disease, and/or Autoimmune Arthritic Diseases.

I have shared the "story" about this bracelet (that by the way I AM WEARING)! "proudly" I may say also. So, proudly, I find myself not wanting to take it off. So, it is a wonderful idea that there is one of the "rubber types" that come with these. That way I can shower, do laundry, housework, or just about anything, and still have "IFAA" right on my hand, and at my side! Tiffany "hand makes" every one of this original "Buckle Me Up" Bracelets just as she did from the very 1st one. Which is how IFAA took its' first baby steps, into a "Movement" and then quickly to a "Non-Profit" Foundation, which is moving ahead for patients by leaps and bounds! These are a bit "blurry". I took them hurriedly yesterday morning. But, I'll get more today that are clearer and much better. But for now I just have to share these!!!





A bit about my own "Active Volunteer" journey. I happened to have met Tiffany Westrich Robertson, who is the "founder" of what now is known as the IFAA. Through a mutual Facebook friend, I found out about an "art" show that would benefit RA, Lupus, Still's Disease, Juvenile RA. Sjogren's, MCTD, UCTD along with the other autoimmune arthritic diseases that I suffer from, but I also am and have been a very strong ADVOCATE for in getting things changed for us as Patients, Caretakers, Friends, Family, and the Medical Profession. I had sent a message to her about my two published books! I thought they may help the "cause". So, I offered to send a copy of both to her for the "art" show that was to benefit this cause! I got to be friends with Tiffany and follow her life a bit through Facebook. I quickly found out her story about RA, and the same "rivers" that flow way to long before we get out of rushing waters of these illnesses was her journey also. I found out from there about her foundation, volunteering, and I knew beyond a shadow of a doubt I needed to be an Active Volunteer! Thus here I am.... I share these with you, and they are a proud reminder of the difference I am watching unfold through IFAA!!!!   Rhia


Here is what the beads and the design mean on the "Buckle Me Up" Bracelet as it was called in its' beginning.

The 3 silver beads & 3 black beads represent all people working together to make a difference. Red is the color of strength & signifies the strength we all achieve in numbers. The final silver bead symbolizes moving forward to find more people to join the movement to raise a global awareness about Autoimmune Arthritis diseases ...
"The International Foundation for Autoimmune Arthritis".


The "IAAM" was the "infant" stage of IFAA. Beginning as a "Movement" - it was named "International Autoimmune Arthritis Movement", then "moved" forth to be the IFAA.
So, the "IAAM" means (on the rubbery bracelet)

I am..
A Leader For Change,
Hopeful,
A Believer in Progress,
And Rebranding Stereotypes.
I Am an Advocate for
Autoimmune Arthritis Awareness.

Introducing the VERY 1ST Patient-Centered RESEARCH Project - IFAA sponsored by Janssen Global

I was so totally thrilled yesterday evening when I got this announcement! Excited for IFAA (International Foundation For Autoimmune Arthritis), for myself as a New Active Volunteer & for ALL PATIENTS out there have suffered too long, waited sometimes years, went through the pits and fires, walked through what seemed like a long black hallway, before finding a real "diagnosis". Sound Familiar? Yes, it describes so MANY of us around the globe!

               Here is the "official announcement" from IFAA of the very

                                 First Patient Centered Research Project!


http://www.ifautoimmunearthritis.org
So, after much hard work by some dedicated volunteers, which story started with one young woman determined to change the Face of How Those with Autoimmune Arthritis would be helped!

As you can see, we have Janssen Pharmaceuticals Inc. to thank for helping with such an extremely important study! Please take a look at their website to see they believe in patients being their inspiration!


This is truly a new step to the Future of Autoimmune Arthritis being diagnosed early, being treated earlier, less damage, and a better quality of life!

~~~~~~~~~ Congrats! To the both of them!!! This is a remarkable and memorable day ~~~~~~~~~

Autoimmune Arthritic Illnesses - Finding it not "Easy" ... To Be... Me.

An Autoimmune Space - Is it every Easy - to Be - "Your" own Me?



I heard this song last night on a movie we were watching... Oddly enough I found that David Grey's songs really hit home with me, when I was brand new in a huge city. I had never lived anywhere but a small town, & huge cities were something I "visited" to go shopping, to doctors and so forth. I got "introduced" to this man's music just after moving there, when my entire world had been completely transformed. I had gotten on a bus and road for almost 3 straight days and nights, to a job that I had never done, in the middle of Seattle that I knew nothing about, would have to "learn" how to go back and forth from Seattle to the islands around such as Bainbridge, drive in a city that had almost "mountains" in places in the main streets & to where every single thing in my whole life was going to be in the "background". I shall be "reborn" in a manner, you could call it. I was doing a job I never had done before, which was being an assistant manager at one of the apartment buildings in the "creative & quirky" part of Seattle known as Capitol Hill. Even the way of speaking was different there. Words we frequently used in Texas were not said much in Seattle. For instance, the "grocery store" as we called it most of the time in Texas, was the "market" in Seattle. Dinner was used, not "supper".  I slowly "self-learned" to try and "lose" my "Texas dialect" and try to sounds more like a I was "home grown" in Seattle. Of course you can take the girl out of TX, BUT you can never take the Texas Accent out of the girl! Just about everywhere I went the first question was after I said "Hello" was where are you from? I got asked if I were from "GA, MS, NC & several others that people tend to associate with a "southern accent". Yet, even though Texas is considered southern, they have their own unique accent. In fact we sound like a bunch of hicks from the hills. I couldn't completely take away the inflection from my born and bred accent, but what I could do is sound "less" like a southern dummy, and more educated. By the way, the FIRST thing just about every person, man or woman, said to me after I opened my mouth and they heard me speak was "Oh, that is so charming"! Man I almost hated to hear someone say that after while. I did NOT want to sound "charming". To me that just indicated I still sounded like some South Southern woman, who was about as dumb as a brick, drinking iced tea with a sprig of mint in it, wearing some frilly, flowery dress & ordering her many "staff" around all day long. Thus charming did not set well with me... LOL...
Of course being in Seattle for 5 years did "rub off" on me. I began to use "their" colloquialisms. In fact, I brought some of those back withe me to Texas. I never "wash clothes", I do laundry. I never to go the grocery store, I go to the market, the ending meal of the day is not Supper, it is Dinner. By the way I did learn another tidbit of information on "West" coast speaking from a dear friend in Lancaster CA.  One day I was talking about their local sheriff's department staff and I called them the "county boys". She about fell over laughing as she asked me to say that again. Never had she heard the term for the County Sheriff's Officers, called the County Boys. Another one she had not heard, and I noticed it in Seattle also. A "toliet" on this side of the USA is known as a toliet. In Texas it is also a commode. Along with several other "slang" terms. The "pot" is one my Mom says all the time. I think I've rubbed off on her a bit though. I notice now she may say restroom, rather than the pot etc. And when you went to “do laundry” on the western part of the country, in the south you were “washing clothes”. Now the funny thing about that one is due to my Texas accent, it sounds more like “warshing clothes, rather than washing. So of course that just made her laugh more. In fact, I have so many little “sayings” “comparisons”, things my Dad would say, and you hear from on television now or in a place that is quite southern in nature, or Texan, you will hear a few of the sayings my Dad said so often they just rubbed off on me. For instance if you are chronically late for an appointment, Dad would say “He would be late for his own funeral”. Let’s say some one happened to be a bit uneducated, or just say something “off” that may sound a bit stupid, he might say “He couldn’t pour “pee”, with instructions on the heel, or if someone may be a bit frugal with their money, then you might hear, “He is so tight he has to screw his britches on in the morning”. LOL!!!! Believe me, I could write an entire book, on just the sayings I heard all my life, and many of them come straight out of my mouth quite frequently. My husband told me I had so many of these “sayings” that came from my years of growing up with my Dad, and here in Texas, that I should write an entire book on them. I probably do have plenty for a short book honestly. When I sit here and begin to think about them, I can recall hundred’s if I made my mind up to get them all written down. 
The point of all of these things that I am talking about is to find out, even though all of us speak “English” and I guess technically, “American English”. Yet, if you traveled through most of the 50 states, you would find there are all types of sayings, dialects, or colloquialisms in just about every state. I also found out that in some states, they really do not have a quirking type of accent, such as someone from the Southern states, and so forth. They barely have an accent at all. Seattle was that way. There really was not any “accent” or particular dialect. That was what made them different, rather than having a great deal of inflection in their speech.

Onto, the beginning of all of this. Being an absolute music lover, of almost all types of music except Opera, I listened to music almost 24/7/365 when I could. I had probably heard a “David Gray” song in TX a time or two, but I never knew who he was. So, some of the people in the Seattle area really loved his music. Thus, I was introduced to his particular style and sound, of lyrics and music & I just loved it. His lyrics “spoke” to me, especially about how I had came through such a horrendous journey, allowing lots of water to flow under my own bridges, as I burned some, mended others, and built some new and stronger ones.  Another one of my favorite songs, and it is the chorus that I truly love is

(There’s so much time to make up, everywhere you turn, time we have wasted on the way, so much water moving underneath the bridge, let the waters come and carry you away.) Crosby, Stills, and Nash….

Then I hear these lyrics by David Grey, along with many of his songs, and lyrics. When I heard this one in particular, it summed up for me, all that at that time in space for me, I felt the same as the song says, “It’s not easy to be…. me”.

(Lyrics by David Gray - It’s not Easy To Be Me.

"I can’t stand to fly
I’m not that naive
I’m just out to find
The better part of me 

I’m more than a bird…I’m more than a plane
More than some pretty face beside a train
It’s not easy to be me

I wish that I could cry
Fall upon my knees
Find a way to lie
'bout a home I’ll never see 

It may sound absurd…but don’t be naive
Even Heroes have the right to bleed
I may be disturbed…but won’t you concede
Even Heroes have the right to dream
It’s not easy to be me 

Up, up and away…away from me
Well it’s all right…You can all sleep sound tonight
I’m not crazy…or anything… 

I can’t stand to fly
I’m not that naive
Men weren’t meant to ride
With clouds between their knees 

I’m only a man in a silly red sheet
Digging for kryptonite on this one way street
Only a man in a funny red sheet
Looking for special things inside of me 
inside of me ...... inside of me ...(x2)

I’m only a man in a funny red sheet
I’m only a man looking for a dream


I’m only a man in a funny red sheet

It’s not easy ... wu.. hoo.. hoo..

___________________________________________________

I don’t mean this in a haughty, self-righteous way. I meant it in a way, that everyone expected me to be this “Super Human”, with the answers to it all. It seemed I was expected to be “perfect”, yet I was just a woman, and women have to bleed, and I was truly looking for a dream. Part of that dream coming true was found by me in Seattle. 

Every once in a while my Mom and I are talking, and some subject comes up about me and living in Seattle for so long. Honestly, if circumstances wee different, I am almost positive I would still be in Seattle. Where you did not need screens on your windows, no bugs and flies were. For the most part your windows could be open much of the year. Many places had no air conditioning, because you didn’t need it. The seasons there are so mild, Summer is rarely very hot, the Winters are somewhat cold, and you do need heat, much of which was baseboard heating, that I had never seen. Or many of the older apartments in down town still had the old fashioned, boiler type heaters. The ones that are usually sitting in rooms, all iron and they go in loops. A boiler keeps the water hot, and it flows through pipes up to these iron steam type heaters. I had never experienced anywhere that did not require screen on windows or A/C units. 

Mom sometimes brings up really silly questions that I’ve answered 20 plus times about my being there for those years. I healed in Seattle. I did NOT WANT to “come home” to Texas. When that bus hit the road from Ennis, and I got to the Dallas bus hub, and hopped on the one that would take me to Washington State, I never looked back. The healing of my heart, emotions, mind, and my body at that time began. I felt alive, and as if the weight of the world was lifted off my shoulders. As those years began to slowly heal me there, the last thing I wanted to do, is come back to the very place, that caused me so much grief. Sometimes it is difficult for other people, especially those closest to you to understand ideas about loved ones because they are too close to the situation. There is no way to look at something “objectively” if you have your own heart and spirit. 

The “waters” that carried me under those bridges, came full circle and brought me back to where I began the journey. Yet, this time I was much different than when I left. I had put my own self back together again. I did it by myself. I didn’t have anyone to “tell” me or express to me what “they” that I should do. I did exactly as I wanted to do. So, when I entered my “home town” after 5 plus years, I was very different. In a good way. I’m not sure my two kids and Mom, may not have seen it, but I knew it. That was what counted. One thing that I didn’t realize was that I had not fully grieved the loss of my Dad, earlier that year. I thought I had. I felt angry, bitter, mad, sad, and so many more emotions that I was not expecting to be here to slap me in right in the face and hit me in the gut so hard. 

After once again delivering a small novelette to my readers, I am sure some of you maybe wondering “does this have one thing to do with Autoimmune Arthritic Illnesses”?


To answer that question is “YES! Absolutely!” Although I had shown many “symptoms” of Autoimmune Arthritic Illnesses, for many years of my life, even when I came back to Texas, 2005, I had not been given a diagnosis of any type of autoimmune illness. I had heart Degenerative Disc and Joint Disease. I had heard that my joints were just “Falling apart”. I had 2 Arthroscopic knee surgeries in 2007, one on my right shoulder, my left wrist repaired, and was in chronically severe pain every day of my life. I was exhausted all the time, my brain seemed not to function, I began to “feel” sick frequently. Then came the “pain pump” surgery to put in internally. There has only been 1 doctor back in Seattle to mention he felt I needed to see a Rheumatologist. He was sitting that appointment up, but we moved from WA state a few weeks before the appointment. So, I am not quite sure what brought the entire symptom/subject around to my PCP and I. I believe it was just a mixture of symptoms, and possibly my own research over these same symptoms, pain, fatigue, my joints being so fragile, my fingers slightly bent, and so forth. So, between his thoughts on it, and my thoughts on what I had read, he ordered about 28 tubes of blood to send off to do the ANA and every other possible test for any type of autoimmune disease. It took them a couple of hours to even get all of that blood out of me. My veins roll, and are thin. So believe me when I say it took several sticks, and several lab techs to get enough blood in those many, many tubes. 

A week or more later, I got a call from his nurse saying he had the labs back and he wanted to discuss the results. Of course I knew something mush have shown up, or he would have just had her tell me all of the labs were normal. I “hoped” as horrible is this sounds, they all of those lab tests showed SOMETHING WRONG with me! Sure enough my ANA levels, inflammation blood labs were off, along with several issues the lead to him thinking first of all I had Lupus, along with Osteoarthritis. He immediately sent me to a Rheumatologist who was very intelligent. He was elderly, and probably needed to retire, but he still knew what was important as far as labs, and as he examined me, along with asking all the questions he needed answers on, he felt it “maybe” Lupus/RA, BUT due to the wide variety of symptoms that he seen, he first diagnosed with Mixed Connective Tissue Disorder. I did not know a great deal about this particular chronic illness honestly. I first thought maybe it was another one of those “trash can” diagnosis, used when doctors can’t put an exact finger on a real diagnosis. He had told me on the very first visit, after doing X-rays of my feet/toes and hand/fingers, that I showed quite a bit of damage in my toes, fingers and especially my thumbs. He also told me I had Raynauds. He mentioned that I suffered from “hyper-flexing” of my joints. We call some people “double jointed” when they seem to be so limber, but this meant my joints tended to bend backward rather than just straighten out when I was walking and so forth. In other words rather than my knees “stopping” in their proper position when I took a step, it was like my knee would continue to push out further, thus many of my joints did the same. It was also another symptom, of all of the autoimmune disorders that were to come. I went to him for about nine months. He did a great job with extensive blood work, and examining me with each visit. He also had the greatest bed side manner, plus he had to be pushing 75 or 80 possibly years old. Yet he would remember each and every detail about the patient and if a spouse came, the spouse also. He called Jim by his name every visit. He would ask him questions, and have Jim involved in the entire visit. He also rarely looked at my chart. When he came into that examination room, he had everything in mind. He has to have the the best memory I’ve ever seen. Once all of the blood work, X-rays and so on were complete, and he still decided he was not quite sure about the Lupus/RA yet, he put me on Plaquenil. The only ONE thing that both my husband and I really was disappointed with him was, that he did NOT believe in “aggressive” therapy. In fact he even showed on paperwork to still be doing “gold injections”. Which as far as I know have been not done in many years. He also was truly not versed on the newer medications, such as the biologics, that were really coming out strongly about that time. 

So, I began the hunt for a new Rheumatologist. That turned out to be a nightmare! Little did I know many of the “Rheumys” out there, specialize, in one way or the other. I met one that believed ONLY in labs. She was not going to budge on any medications, and she did not care how badly the pain was, stiffness was, and honestly almost took me off of what medications I was already on. At that time I was still on the Plaquenil, plus my regular MD had put me on Methotrexate by then. I went to about 3 visits, and ran. I went to another one that sounded promising. He was more of a “research” and clinical trial for Lupus Rheumy. I ran into one that supposedly was one of the top Rheumatologists in Dallas. It was this huge, fancy, entire group of doctors who had 3 floors in a office building in Dallas. It did not take me but around 20 seconds and I ran. He did not agree with anything any of the other physicians had said. He frankly told me he thought I was just another one of those with “Fibromyalgia”, and that UNLESS my blood work was extremely abnormal, I really was mostly wasting his time and mine. I guess he was a nonbeliever in sero-negative  Rheumatoid Arthritis. Besides, he was just another “click” up the ladder to the researchers, clinical trials bunch (don’t get me wrong I am all for clinical trials) but there was just something about him and another one I saw that gave me the creeps. I’ve never looked it up, but I know in some form or fashion, these physicians that do participate in clinical trials must get compensated for it. After I seen and heard what I did, I figure they must get a pretty heavy load of compensation in one way or the other for participating in them. 

FINALLY due to a dear friend, who in fact I met on Facebook, led me to the very BEST, venturing to say Rheumatologist in TX for sure. I bet he would rank very high up on the scales in the entire nation! He is an “aggressive” thinker. He also LIKES the fact patients educate themselves, research their symptoms, medications and illnesses. He appreciates those who help him, by helping themselves. In several occasions, I’ve went in to see him with a note about a different medication, or if we can try this, that or the other. And unless he has some really specific reason for NOT using it on me, which it fully explains his reasoning, “we (him and I) have followed some of the things I suggested. As I always say, I am NOT an expert, not a doctor, etc…. but when it comes to MY OWN BODY, I am ranking very high on the expert level of what I feel will help or not help me. Most of us are “experts” when it comes to our own bodies, illnesses, medications, and so on.

Now, to the final “summary” of why all of this long, drawn out detailed story comes about, after me hearing a song that is so “special” to me is, I found my very first deep understanding of myself, and my own life, that 5 years in Seattle. At times is was not a grand picnic. I was lonely some, there was no one there to help me with anything. In fact my car gave me some issues, just before I was leaving on a vacation, and I had to trust my instincts, along with trust people I had been working with, on a mechanic. So, as incredibly much of strength, determination, self-worth, feeling I was capable of taking care of me and all of those good things that so changed in me was only the first leg of that journey.


Alas, what transpired in Seattle to change me, and make me stronger, wiser, and more determined also helped me to be right here, right now, facing each and every hurdle that comes my (our) way.
Coming back “home”, facing the loss of my Dad, and finally facing my own extremely potentially “serious” and could be down right deadly diseases, 8 plus surgeries within 2 years, and all of the other million things here, I WAS able to first of all, be me. I found “me” in Seattle. And “she” came back with “me”. So, “no I can’t stand and fly, and I’m not that naive, I’m just out to find”, “the better part of me” - Even “super people” truly bleed, I’m more than a plane and more than some pretty face aboard a train… yet It’s Not Easy To Be…Me….


p.s. It’s not easy…. for anyone of us dealing with autoimmune illnesses, which rule our very existence so much… to be YOUR own “me”.